In June my long-term contract with Boehringer Ingelheim comes to an end so I have started actively looking for a new role. In case you are not aware job hunting really sucks! One of the main reasons for this, IMHO, is the incredibly painful online systems most companies now use.

To give you a more specific example – I have been trying to apply for a digital role with a certain top pharma through their careers portal … for the last hour but to no avail. The first pain point was trying to set up an account. I always try to use my pharmaguapa email for job applications but apparently the system did not like this email and kept telling me an account already existed, but when I tried to reset the password I was told no account existed with that email account afterall. After multiple attempts I gave in and used my private email to create an account.

Next up came what should be straightforward – actually applying to the role. At first glance I was hopeful as the system looks better than some of the others I have used. However looks can be deceiving and now 1 hour later I have still not managed to get the system to upload my CV and let me move onto the next section.

Sadly I have had this experience all too often. With today’s technology and understanding of User Experience filling in an online job application really should be very easy and straightforward, and yet it remains painful.

I will of course persevere – and in doing so I am aware that if I ever need to apply to this company in the future I will no doubt have to go through the same painful experience – starting with issues logging in (I will almost certainly forget that I had to use a different email address than normal).

Of course if you know of any suitable positions (ideally that does not involve a painful online application!) please do let me know – the sooner I find that new opportunity the sooner I can stop putting myself through this painful process! You can find a copy of my CV here.

I am currently at Intelligent Health’s AI conference in Basel so thought I should write a blog post on the topic. I first got really interested in AI at SXSW a few years ago when I saw the applications of AI in chatbots for patient groups with limited access to care, such as refugees. I have since looked deeper at the topic as a result of the Reverse Mentoring project and believe this is a technology that will really bring huge value to our industry.

One thing that strikes me from the presentations I have seen at this conference is the level of partnerships between pharma and tech companies. This is a trend that I hope we will see more of – big cumbersome pharma companies are not the most innovative but by partnering with start-ups there is a great opportunity to bring new, innovative thinking into the organisation. However to get the full value of these partnerships it would be worth sharing that experience and learnings with a broader internal audience. Too often these partnerships remain within a small team and other people not directly connected to the partnership have no idea it is happening or the outcomes. If we want to drive new thinking in the industry then we also need to disseminate outcomes from these partnerships more broadly within companies.

Another factor that is clearly coming across in this conference is how critical access to data is. Whilst I have heard patients mentioned a few times I have not yet seen anything that is looking at empowering patients to share their data (and full disclaimer there are multiple streams so maybe this was covered in a stream I didn’t attend). By combining AI with Blockchain for example we might see some innovative solutions to the patient data access issue. Having more accessible data will benefit everyone – not just the AI technology but also the patients and HCPs themselves. I have heard so many people complain about going to a new doctor and having to essentially start from scratch as they do not have access to their full digital record. Of course at the same time we need security and privacy for these said records.

Leading on from this point (again with same disclaimer!) I am also struck – but not surprised – that with all this talk of patient data there appears to be no actual patients on stage talking about what AI really means to them. Just as I have spoken at conferences about how social media has had a huge impact on my health it would also be great to actually hear from patients who have seen a positive impact from AI.

Today I gave a presentation on Key Online Influencers (KOI) to my reverse mentoring group and one comment I got was “why on earth aren’t we doing this?!”. Great question. While many other industries have embraced the age of the online influencer pharma has not. Now we all know that pharma has been very late to game in terms of social, driven my multiple misconceptions, most of which revolve around a “we can’t do that” attitude or perspective, but we are also an industry used to working with “influencers” so why is the concept of online influencers so difficult?
I am old enough to remember to industry pre-digital, and unlike some other industries, pharma actually embraced the concept of influencers, in the guise of KOLs (Key Opinion Leaders). There are process and job functions dedicated to working with KOLs and yet when it comes to digital many run out of the room screaming (not literally I hasten to add). It seems to be linked to this lingering fear of social media, and the lack of perceived control that this channel has brought. Yet we have the process already in place that just need minor tweaks to cope with the online realm so why are we not doing more with Online Influencers?
I firmly believe the answer to this lies in a lack of understanding and the fears that many senior people still associate with social media. Counter this with the digital natives we now have working in pharma who may not fully understand the reticence to use the channel but are not yet in a position to champion it or to challenge the status quo (unless they are reverse mentors!).
What we need is for our senior leaders to embrace what has become one of the main communication channels of our age. We need those leaders to step up and help us bridge our old KOL process to a modern online friendly process. We need those leaders to question their teams as to “why on earth aren’t we doing this”. The only way they will be able to do that however is through education and actually starting to understand this channel, and understand that it brings us value and is not to be feared but rather embraced.
I am very fortunate that I have been able to build up a reverse mentoring programme for my client and am starting to see some of this change happening. It is immensely rewarding to start seeing senior leaders say things like “why on earth aren’t we doing this” when I talk about online influencers. It is also so rewarding to see the change that this programme is driving. After years of helping drive change in pharma companies this has to be one of the most personally rewarding initiatives I have been involved with. When I set up the programme I would have been happy to see one or two senior leaders using social – but now I a seeing many more signing up, and also embracing other new technologies such as AI and Blockchain. Maybe soon the question will be “why on earth didn’t we do this sooner”…

Back in June I read an article on the BBC about influencers and the potential backlash against them. It is fascinating to see the rise of the influencers on social media and the impact they are now having on people’s lives. It is a sign of our times that some of today’s biggest celebrities online are not movie or pop stars but ordinary people who through a combination of hard work, luck / timing and personal investment have managed to build themselves up as online influencers. Some of these online “stars” can get as much as $20,000 per post and they can have incredible power on people’s behaviours and attitudes.

Sadly not all of this power is well used and we have seen plenty of health scandals and issues that have arisen as a result of influencers sharing false information, such as the vaccine issue or an increase in body dysmorphia as teenagers try to mimic the perfection they see on Instagram.

This issue is then further compounded by an increasing use of cheats and fake accounts to build up the accounts – often to appear to be more influential and therefore generate higher revenue from posts. As the article mentions this is very vexing for the influencers who have actually got to where they are by a great deal of hard work, rather than paying someone or a company to boost their followers for them. I fully understand them – I personally have been working hard to build my own Instagram account, only to then see a friend’s account jump by over 6,000 followers in a matter of days. On closer inspection most of his new followers appear to be fake accounts but this still seems to be working in giving him a leg up in terms of impact and visibility. I myself now am wondering whether I too should consider this route – because frankly I do not have the time to spend in order to get thousands more followers.

Whilst for me this situation is vexing it highlights an important issue – namely that there seems to be little remedy for the rise in fake accounts … and the subsequent influence they help generate. Whilst those teens see perfection what they may not realise is that a great deal of that perfection is in fact fake and bought.

One could argue that one potential remedy is for companies to invest more and put more effort into countering negative influence, e.g. in the domain of vaccines, however this is unlikely to happen in the near future. Particularly in pharma I would question whether many pharma companies have the talent and resources to do this anyway. As an industry we are still woefully behind, and this is not helped by a lack of internal training and understanding on this critical channel, or senior management support, e.g. through extra headcount and resources. I see this lack of resources and expertise through the teams that I support but also by the low number of jobs coming up in pharma social media (heads up I’m looking – email me if you have an opportunity!).

My fear is that by the time we as an industry have caught up to where influencers are today it will be too late for many of our patients. Unless we start to really invest in this mainstream channel, and build up the teams and expertise to do so, we will continue to lose ground to the fake news and false information that is being pushed by online influencers with a very different agenda. And do we not as an industry have a duty of care to our patients to try to ensure they have access to accurate information? I would say we do but I do not see us meeting this duty of care through our continued ignorance when it comes to social media.

My most popular image in Instagram … except I paid to promote it so does that really count?

I am very open about my disease and the painful journey I have had to go through to get my health back. It is because of what I went through that I am now so passionate about educating anyone who will listen, and it is because of my journey that I am so passionate about social media.

However I also find it so frustrating working in an industry that does not listen to it’s core customers – indeed often does not consider patients as a customer. I work in an industry that emblazons its websites with words around patient centricity but in reality does very little for its patients. I work in an industry that has huge teams dedicated to marketing and communicating to doctors but only has small teams (sometimes a single person) dedicated to patient interactions and communications. How can we as an industry talk about caring for patients when we do not even resource our patient advocacy teams appropriately or hire patients to be part of those teams? I have already written about the fact that to work in patient advocacy for a pharma company you need to have experience in working with governmental agencies but not in social media and not as a patient. Surely patient advocacy teams should include actual patients?!

Whenever I have the opportunity to share my story with pharma teams they are often blown away by my passion and by what I say but sadly I feel like nothing changes. I feel as an autoimmune patient our voices are just not being heard by the very industry that often saves our lives. I am frustrated as an autoimmune patient that our voices are not being heard because many of us do not have a terminal disease like cancer or a visible disability. We are not dying but we are suffering.

Many of us are surviving but not “living” – we battle on in silence, we suffer in silence, and we often carry on being stigamtised because what we have is not understood or visibly obvious. Just because you can’t see our pain does not mean it is not there. Just because we do not have big patient associations behind us does not mean we do not exist. Just because we have a chronic disease that will not kill us does not mean we are okay. We battle on but we want to be heard and there are more and more of us out there.

I am passionate about raising awareness for autoimmune diseases because I am an autoimmune patient. I am passionate because time and time again I meet another patient, or friends and family of an autoimmune patient, and I am struck by the same stories we share and by the fact that often we seem to be ignored. Just because we are not dying (or at least not quickly) or because physically we look healthy does not mean we are not suffering. Just because our conditions are not always fatal does not mean we should not be heard. It is time for our voice to be heard.

It is time for us to stand up and tell the world that it is not okay – we are suffering and we need support. We need support to fund research to find answers. We need support to help make people understand that not all disabilities are visible. We need support because frankly when we have a bad day it is the equivalent of your worst nightmare but we persevere – and often in silence. We are so much stronger than you could imagine but we are also in desperate need of your support.

All we ask is that you hear our voice and support us in our daily struggle – because together we can fight these diseases and together we are strong.

Today in one of my mentoring sessions we were looking at the use of Artificial Intelligence in the pharma industry. This in itself is a fascinating area to look at but equally fascinating was the discussion the topic generated – namely the changing dynamics of the healthcare industry and the pharmaceutical industry’s continued snail pace of change.

As we looked at some of the new players entering the market, such as AI startups like BenevolentAi or the big players like Google and Apple, we discussed how pharma is starting to miss increasingly large value opportunities in healthcare, which tech companies are seizing. Whilst currently much of the pharma industry still remains clearly in the domain of the pharma companies that may change in the future as the industry fails to adapt to changes being driven by technology.

Looking at AI & clinical trials for example – currently clinical trials are very clearly the domain for pharma because of the huge financial investments required but also because of the need for highly skilled and experienced people to work in this area. However as AI makes inroads, for example in molecule identification, what’s not to say that non-pharma companies might look at this area and bring in their technology expertise and just hire / poach the expertise they need to run the trials … or indeed just outsource to the CRO?

This article also gives the nice example that technology will increasingly play an important role in treatment and if tech companies find that the pharma industry is the bottle neck to their products what’s to prevent them just buying their own way in to the industry? Once this happens pharma could potentially face major issues as all of sudden their direct competition no longer comes from another slow, cumbersome pharma company but rather an agile, dynamic and fast moving tech company.

And this leads on to another factor that is also hindering the industry namely how cumbersome and slow the internal systems and structures are. Even when a pharma decides to partner with a start up (which is happening but IMHO not as much as it should be) often the clash between the two cultures proves a major obstacle to the success of the partnership. While a startup will expect to move quickly – and may need to move quickly due to limited funds – they then find themselves with a partner who may expect things to take years (by which time the startup has run out of funds / has lost key people / etc.).

Many people in pharma argue that due to regulations this is a totally different market and it is the regulatory environment that hampers speed I would push back on this. Time and time again regulatory constraints is bandied around as an excuse when it should not be. The length of time it takes for a pharma company to draft and sign off a contract or agreement with a startup for example has very little to do with the regulatory environment but rather with the internal systems and staff.

Another cultural aspect that differs between pharma and tech companies – and again which is only partially linked to the regulatory environment – is the right to fail. Traditionally pharma, like many other industries, will only launch or release something when it is perfect, which contrasts with the tech industry which focuses more on agility and adaption. Many tech companies will launch something as a beta version – so not final – but will then adapt it based on feedback and data. Whilst this approach may not be appropriate for the actual pharma products there are many other parts of the industry that would benefit from this approach.

So will we be losing our jobs to the likes of Google and Apple? Probably not in the near future but if pharma companies continue to only adapt at a snails pace it will become less of a philosophical debate and will move closer to reality. And what is certain is that as pharma tries to deal with increasing costs and prices pressures if they do not start to look at the full value picture of the healthcare industry they will lose out on potential new revenue and value sources – and there are plenty of non-pharma companies lining up to grab this value.

One of my main activities at the moment is supporting clients set up and run Reverse Mentoring programmes. As part of this one of the things I do is lead and support groups of Mentors, many of them digital natives, and part of this includes building and driving an online community for them. Today I thought of starting a Monday Motivation stream and as such I was looking for motivational quotes.

As you can probably imagine the internet is full of motivational quotes – but I actually found quite few were far from motivational. Many of them essentially were telling me to work hard if I want to succeed – not rocket science but I do not find being told I need to work hard that motivational either. For me the motivation is what is driving me to work hard – hard work in itself is not the motivation for me!

I also found some of them could also have a detrimental effect, particular on the younger digital native Mentors who are just starting their careers. Some of them imply that if you only work hard enough you will succeed and everything will be okay. From experience I know that sometimes no matter how hard you work at something it still fails. I also know that sometimes you simply cannot work that hard (for example due to ill health) – what do you then? Does that make you a failure?

But what about when talent does work hard? Where does that put you if you don’t have talent?

I think far more helpful for my young mentors is to understand that working hard and trying is important but also to understand that if your heart is not in it, or if circumstances are unfavourable, you may not succeed … and that that is not the end of the world, as long as you can pick yourself up and move on. One of the most valuable lessons I have learnt is to accept that there are days, or bits of work, that just do not go well – and that I should not blame myself (well unless of course it really was my fault!). I learnt that sometimes it is okay to just sit back and take a breather. Sometimes it is okay to have a lazy day. Sometimes shit just happens – and you will need to find your own way to deal with this, whether it be taking a sofa day or hitting the gym or working harder. Dwelling on what went wrong to try to find the lesson to learn (because these quotes tell us to learn from the bad) sometimes is just not healthy or productive – sometimes we need to just accept, close the door and move on.

I also learnt that sometimes you just have to work through the bad – and that it will not get better no matter how hard you work at it so you have to find ways to motivate yourself through it. Hard work does not always lead to success but is part of life. You need to find your own personal, and ideally non-work related, thing to motivate you through the bad days, whether it be a holiday of a lifetime or that new dress you want. You also need to balance your motivators with big things (the holiday) as well as small short-term achievable things (such as the dress).

Finally working in reverse mentoring I think it is also important to understand that what drove success 10 years ago may not be the same thing that drives success today or that will drive success in 10 years time. The meaning of “working hard” and how we work has changed considerably, and will no doubt continue to change. In the past working hard might have a meant a 9-5 day working in an office but today it could mean more flexible schedules and working remotely. Today’s leaders will need to start leading differently to deal with the changing dynamics driven by technology and societal change. Whilst we need to learn from past and existing leaders, equally today’s leaders need to learn from the younger generations because that is where future success lies. That is what makes reverse mentoring such a valuable tool – and this is what motivates me to work hard in this space.

Like many of us I have often struggled balancing regular exercise with a busy work schedule. This is especially an issue for me as my sport of choice was swimming and the only time the pool here in Zurich is not like the Gotthard Tunnel during peak times is mid-afternoon. I must also admit that even when work does permit my afternoon swim it can be all too easy to find reasons not to go swimming, particularly when it’s cold and wet outside.

We all know however that regular exercise is important – and for me that especially so as I control my autoimmune disease … and contend with my ageing body. The fitness industry has blossomed as companies cater to this increased awareness of the value of exercise coupled with people’s busy schedules, as well as the increased pressure on us to look fit and healthy (thank you Instagram). It is no surprise then to see the likes of Fitbit see revenue coming in at over $1 billion, as they take advantage of this dynamic.

It is however not just companies like Fitbit that are benefiting from need to exercise and be healthy. There are a growing number of online influencers and sports trainers and coaches who are providing services and support to their customers online, for example through YouTube channels and blogs. It is thanks to these, and today’s technology and the internet, that increasingly means people do not have to pay expensive gym (or pool!) memberships that they never use to get their exercise fix and indeed people no longer need to leave the comfort of their own home to exercise.

In my case it was my discovery on yoga on YouTube that led not only to me adding a new sport to list of hobbies but also led to me now doing exercise at least once a day (but most days twice). I no longer have to allocate time in my calendar for travel to and from the pool, but rather can just hop on my yoga mat from home and get straight into a session. Thanks to Youtube, and Yoga with Adrienne, I am now fitter than I have ever been. Thanks to YouTube I have my own private “classes” at home – free of charge – which I can do whenever is the most convenient time for me.

Whilst we may like to focus on the sexy side of health tech – such as Wearables and VR – it is actually social media that is leading to some of the biggest impact in this area. It is thanks to platforms like YouTube that we can see a democratisation of sport, where sport such as yoga, is no longer just for those who can afford to go to classes or gyms, but is now available to anyone. The convenience that guided home exercise also makes this type of sport more accessible as people can fit their exercise routine in around their busy day – and not around when the classes are or when the gym is open.

We often hear about the negative side of people staying at home surfing the web – but here is an example of the positive side to this. I for one will be forever grateful to YouTube, and Adrienne, for providing me with the option of practicing my new sport from the comfort of my home which not only helped me through a difficult time but also has helped me maintain my health … and keep my weight down.

This morning I was reading about the difference in opinion between Apple’s Tim Cook and Facebook’s Mark Zuckerberg on whether AR or VR is the future. In my opinion they are both the future in their own different ways and for different audiences.

As an owner of a Samsung Gear VR I have to say that I think VR is pretty cool and can imagine it will only get cooler with newer technology. The opportunities for VR are huge, from gaming, to education to healthcare. I particular like the way VR is bringing hope and relief to patients, for example through sensory therapy for burns patients (the use of VR therapy during bandage changing saw a significant reduction in pain).

Currently though VR is still somewhat the domain of gamers and tech “geeks” like myself. With the advent of cheaper headsets this may change but will VR ever become a mass market concept? There I am not sure given the “isolationist” nature of VR – namely that you have a headset on which immerses you in the VR world but at the same time can “remove” you from the real world and real contacts. I am not sure I can imagine the masses sitting around in their own world with their headsets.

AR on the other hand exists in the “real” world, being simply augmented over reality. AR offers benefits in the same fields as VR, namely gaming, education and to a degree health too. However the lack of full immersion can also make AR less impactful that VR. What AR does offer however is the merging of technology and real world in a way that people can potentially enjoy together. AR is no longer a new technology though and we also have not seen it take off to follow the hype that surrounded AR a few years back. We also see AR still being used by individuals in their “own” worlds like the Pokemon gamers. This could of course change with new uses and versions of AR, and AR could become something used by the masses in their daily lives, either individually or in groups.

Both technologies offer great hope and opportunity but in my opinion both will always remain more for the young or tech savvy rather than technology for the masses. Both technologies have been surrounded by masses of hype that, to date, has not lived up to expectations. I suspect both these technologies will slowly become part of the norm in certain situations, such as in sensory therapy in hospitals, quietly and without great fanfare, while much of the hype will vanish or move onto the next new technology. But who knows ….

One of the main services that I offer my clients is social media coaching and reverse mentoring around social media (and other digital). I often get asked by my mentees what the point of some of the social media channels is. Obviously as a patient advocate I have lots of very relevant examples of the value in healthcare but right now I am also able to share another great value add from social … the “marked as safe” functionality.

I think we are all avidly watching the news of hurricane Harvey, Irma, and Jose, as these forces of nature smash into land. As an active animal rescuer my thoughts go automatically towards all the helpless animals trapped – either because they are strays or because their heartless owners left them to the mercy of the storm (i.e. left them to die). Through my animal rescue work I have also got to know many other animal advocates across the world, including in the Caribbean and Florida.

Thanks to social media, particularly Facebook, I have been able to find out about their last minute rescue efforts and also follow how they are coping with the hurricane. Thanks to Facebook’s awesome “marked as safe” feature I can sigh with relief as one by one they log in and let us know they are safe. One of my Facebook friends has been able to stay in touch throughout the hurricane from her bathroom, as her house slowly got ripped apart around her, all thanks to Facebook. She actually disabled all the apps (to save on battery) and was using Facebook mobile and text messages to another friend in California who posted on her behalf and this way was able to stay connected for all the hours of horror that she went through.

Thanks to social media I was also able to follow the dramatic rescue of dogs from a flooded shelter in Texas, while I was in Bali on the beach. I followed the story unfold as heart-wrenching photos of the flooded shelter with the dogs still stuck in their enclosures emerged. The shelter owners begged for help on social media – they had been left to fend for themselves as the authorities focused on rescuing humans. The call went out for people with boats to help and then for help in finding somewhere to house the 70+ animals from the shelter. And social media responded! I nearly cried when I saw the post that they had managed to get all the animals out – and this is largely thanks to publicity that social media generated.

One animal rescue friend however remains silent – and I have been checking his Facebook multiple times a day to no avail. He is in Puerto Rico and is known as the “cat man of Puerto Rico” for all the amazing work he does caring for over 200 stray cats on the island. His last post was heartbreaking as he had gone out to feed the strays one last time before Irma hit and had no idea when he would be able to get to the cats next and how they would survive the storm. I am hoping it is simply that he is without power and as a result of the infrastructure damage can’t get online to post but as each day passes my concern for Glen and his cats grows.

And so I keep checking … and cheer myself up while I wait to hear that he is okay by following all the amazing animal rescue stories that are filling my Facebook. Hopefully next time one of my mentees or workshop attendees asks me about the value of Facebook I can share the “marked as safe” functionality as a great example … including that Glen was able to let us know how he and the cats survived the storm.

Thank you Glen and all of those who battled tireless through this adverse weather to save the animals – you are unsung heroes!

If you’d like to help with the hurricane animal rescue effort check out the HSUS website